Care for Rare

Towards the end of our NICU journey
It is exactly one year today we brought Penelope home from NICU. 🎉

After six weeks and two days in NICU, this day could not come fast enough but it was still utterly terrifying. We were still trying to establish feeds, she had NGT still in and quite bad reflux. She was on three hourly feeds to keep her blood sugars at a safe level as well as over ten medicines staggered throughout the day. On top of this was all the regular baby stuff such as dirty nappies and bath time. I never thought I’d sleep again. Even when she was asleep I sat there and watched her breathing; it was scary not knowing her sats!
But, a year on and she is doing fantastically! The NGT came out after about a month of being home. The reflux resolved and disappeared once she started on solids. AND her meds were all gradually reduced so she doesn’t have half as many as she used to! She no longer needs waking up throughout the night for feeds.

She hasn’t let her rocky start hold her back. She sat up unaided, crawled and walked ‘early’ for her age. She is like any other lively 13 month old now, loves to play and is astonishingly beautiful and full of life. I couldn’t imagine this would be the case one year on. 💕

Congratulations on making it through the first year! Love these photos, especially the hair. My daughter is almost the same age, but I can only imagine how stressful it must have been for you in those early days #babybrainmonday

Congratulations on her making it through the worst of it, I can’t imagine how difficult that must have been. Love the pictures, especially those gorgeous curls!! Thanks for linking up to #happyquacks xx